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Old Fri Dec 12, 2014, 07:03 PM
Susan Susan is offline
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Join Date: Sep 2003
Location: Chicago, Il
Posts: 101
Kathy, I have PNH and have neutropenia. My original dx was AA and PNH. The AA went away, marrow became normal and counts went up. My ANC had stayed around 1.2 occasionally dipping to lowest 0.6. Plts not too low.
Recently ANC fell to 300, then 200. Had BMB today, retics just fell quite a bit. Expecting to be told I have AA, hoping not MDS or worse. I thought the low ANC could be temporary & caused by a recent mild illness or the antibiotics. But I'm healthy again and no improvement.

Treatment of neutropenia depends on the cause and how low it goes. The correct diagnosis is extremely important. At or under 200 is severe and should be treated. It's actually better to treat it before it goes that low.

For Aplastic Anemia, unless you're younger and choose transplant ATG is the first line treatment. I'm actually very upset right now because I've seen a new Hem the last couple od years and she hasn't been checking the retics.
Response to ATG is higher if the retics, ANC, and absolute lymphocytes are higher. If I had known my retics were trending down I would have had a good window for ATG treatment. Now I have to wait and watch hoping these will go up but risk infections. But if I wait and these #s fall further my chance of response will go down further.

So be sure your hem is checking all these counts regularly! It's very strange how quickly the marrow can change.

Never heard of IVIG, depends on diagnosis. The wrong treatment can be harmful. Best to ask a very experienced bone marrow failure expert.
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AA/PNH Dx 1998, Warfarin, Soliris
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